Ryan’s Story

Site created on July 3, 2019

Welcome to our CaringBridge website. We are using it to keep our many family members and friends updated in one place. As many of you know Ryan was living out in San Diego with his wife, Pai and son, Noah. Serving his last year as a Marine. In mid June what started as a small lump on his tongue, turned out to be a tumor. Scans also showed one his liver. With Cancer on his Left hip, right Humerus, and Spine.  Ryan was misdiagnosed with Ewing's Like Sarcoma. He was eventually properly diagnosed with an extremely rare case of NUT Midline Carcinoma. There is very little known about this Cancer. There is no known cure or  set protocol in treatment. With about 250 reported cases worldwide . This is a very aggressive Cancer that we are currently treating with the Scandinavian Chemo protocol. This is our journey as we fight against something we cannot see. But absolutely determined to beat. We appreciate  your support and words of hope and encouragement.  Thank you for visiting.

Newest Update

Journal entry by Nancy Bakkestuen

Hello Friends and Family! What a time we live in these days huh? With the world seemingly to mimic more like a movie storyline. We have also been hit with not so great news. In the recent weeks since Ryan's last PET scan. He started to feel ill. More pain In his chest. Which made it hard to breathe. They did a CT scan last week of his chest and said that the tumors in his Ribs looked unchanged and they were unsure of why he hurt so much. He then started with bouts of vomiting every morning. Which he described as feeling like waking up with a hang over everyday. This past week he started to feel pain in his back and the chest pain worsened. Making it hard to breath and move. Then he felt like what seemed to be a swollen lymph node in his neck. Making turning his head hurt. This morning they did a repeat PET scan. It seems the Cancer has spread. The tumor activity in his Liver seems to have picked up and the Tumors by his ribs has spread. Pressing on some nerves. Which is causing his pain. They also saw growth in his back and that swollen lymph node, is actually the cancer in his throat from his previous tumor acting up again. This was not what we were hoping for at all. Tonight they decided to admit him and keep him over the weekend in case he needed more help then he could receive at home. Monday they look to start radiation and then talk about Chemotherapy and medication options. Unfortunately with Mayo's NO Visitor rule. He will be there alone.😔. This is quite the blow. Please please please keep Ryan and Pai in your prayers and thoughts. Tomorrow is a new day and we can only hope for better things. We love our boy so much and wish at least someone could be with him this weekend. But we know the hospital is just trying to keep everyone Healthy. As  we all should.So Stay home everyone if you can! Hug the ones you love. Call the ones you can't be near. Lots of Love like always♥️
Nancy
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